A favourite quote and a way by which to approach life.

Today is the tomorrow that you worried about yesterday.

Wednesday, 2 November 2011

Three weeks and counting

I've made it back to you at last.  I'm still in hospital, and have been here for over three weeks now, but I do seem to be making much more steady progress now and I can see the possibility of discharge.

As you know, I had a slow decline this time round, and I was getting really tired with it, but things escalated quite rapidly on 10th October.  In the early afternoon I emailed the Charge Nurse (J) on Ward 29 at Freeman to say that I thought I'd be heading their way soon, and a couple of hours later I was in resus in A&E at RVI after phoning Ward 29 and finding that they had no beds.  As it turned out I wouldn't have lasted long on Ward 29 anyway as I went from resus in A&E to HDU in the Critical Care Unit at RVI, and was there from the Monday until the Friday.

I had a fairly horrendous time in HDU at RVI, which I can't say a whole lot about on here as those involved are being disciplined (albeit unofficially), but one night was particularly awful and caused me a great deal of stress.  I'm sure the stress has contributed at least a bit to my slower recovery, although things were slow anyway, most likely because the decline was slow.

So I made it to Ward 29 at Freeman on the afternoon of Friday 14th October, and although I was still on the aminophylline infusion I was kind of doing okay.  Saying that, though, something didn't feel right ... it didn't feel like a stable improvement, and although I was able to get off the aminophylline by the Tuesday (I think) I wasn't convinced of the improvement, and actually felt like I was getting a cold.

I was right.  I did get a cold and the cold rapidly headed south to my lungs, giving me a none-too-pleasant chest infection.  I had a barking cough, I was exhausted, I wasn't sleeping well, I was wheezing more and more, and by the next Friday I was in HDU in Freeman.  Thankfully I only had 24 hours down there and was able to come back to the ward, but I was far from well and still very wheezy.  It's taken a heck of a long time for the wheeze to settle and to begin to feel like I'm mending, but at last I think I'm getting there.

For the second time this admission the aminophylline is down - as of yesterday - and so far I'm doing okay.  I was a bit tighter again this morning, and ever so tired, but things settled after nebs and then I slept the morning away and was woken for lunch.  I'm still very tired, but it's been a long haul with a lot of stress and upset, and a big set-back in the middle that itself made me want to cry.  The trouble is that crying can make my lungs tighter so I have to push the upset and stress to one side until it's safe to express it, but then I think others can be confused when it does get expressed as there may not be any particularly apparent reason for the tears when they come.  For the most part the tears still haven't come yet for this admission, and I have a feeling that they won't until I get home.  There's almost too much to process while I'm here, even though I have my own room (the benefit of being MRSA positive) ... I'm kind of numb most of the time ... just getting on with it ... almost afraid of touching the miserable bits, but I know that I will have to in the end.

I know that even what I'm writing here is probably coming across as emotionally detached.  I also know that it wouldn't be so detached if I could write about what happened at the RVI, but I can't.  Though I will say that what happened has left me feeling like I'd rather take the risk in the future of waiting at home for Ward 29 to have a bed, than end up back in ITU/HDU at RVI, even if that means I don't survive.  However, the RVI ITU/HDU matron is on the case, has been as reassuring as she can be, and has told me that if/when I'm in her unit again I'm to have the staff tell her that I'm there.  W has also said that if at all possible (i.e. if she's not working the following day), she will not leave me alone in the unit again.  I think that's probably all I can say about it.  Sorry to be evasive, but I feel I should be at least a little cautious about how much I say.

The next step is to get off the oxygen.  It shouldn't be too difficult as I'm only on a trickle of 2 litres now, and as I've said, my progress does feel much steadier now.  I've even been out for a proper trundle in the park today, with Dad pushing the wheelchair.

Nobody has yet mentioned home, but providing things continue as they are then I'm anticipating discharge by the end of the week, maybe Friday.  In my head it's Friday, anyway, though I haven't mooted the idea with anyone yet either.  I might do tomorrow.  Actually, these days the medics tend to leave it to me to tell them when I'm ready for discharge, and at the moment I think Friday is probably realistic.  Also, I have to get home by Saturday because the cat is terrified by fireworks so I need to get home to comfort him and most likely spend a large proportion of Saturday evening with his head stuck in my armpit as he tries to hide from the noise >^..^<  Bless him.  I miss him so much and can't wait to get home to him.  Here's hoping Friday is doable.


Tequila Sepulveda said...

Sweetie, I send prayers and good mojo your way. Feel better, and BE better, soon!

Joy said...

From the little you've said, it sounds horrendous. I hope the tears help when you can allow them to come.

J x

Sal Adams said...

Fingers crossed for you! You are amazing, Beckie, & I'm proud to have you as a friend. I'm having a tough time healthwise but your story has put my stuff into perspective. Love & hugs, Sal.xxx

BeckyG said...

Thank you, all, so much for your lovely comments and support. It's been a very stressful time and I just want it over with now. I'm hoping I'll be home soon. Thank you again. You keep me going.

B said...

Oh Becky. it sounds horrendous and yet I suspect you're still underplaying it. I shudder to think what they put you through that you'd actually risk death rather than go back there :(

Everything crossed for improving enough to get home very soon xxx

BeckyG said...

Thank you, B. RVI really was terrible this time. I'd love to be able to expand, but I'm wary of legal implications of doing so. The staff involved in what happened (all the nursing staff on one particular shift) are being 'unofficially' disciplined, although I'm not yet sure what form this is taking. I'm waiting to hear back from the unit's matron about the course of action she's taken, but I should hear in the next day or two. The matron has been as reassuring as she can be about what occurred never happening again, but my trust in the unit has been destroyed. I still feel like I'd rather risk my chances of survival/dying at home than end up back in that unit... We'll see.